LaurenK

Ughh now we find my son also has mycoplasma IgM elevated. Would IVIG still work in this case?

Did your son start at a lower than normal dose for regular allergy shots? I heard with PANDAS the starting dose must be lower than the dose for normal kids?

IVIG doesn't work for mycoplasma?

Does your son have any co-infections? Could that be why he is relapsing?

did your daughters PANS symptoms get better during allergy season after the shots? Is there a specific way that you have to do the shots?

Sorry for all of the questions. We were told not to stimulate my sons immune system but he has severe allergies. Is there anyway to do allergy shots w/o having a severe exacerbation of PANDAS/Aspergers symptoms?

My son is very young, he has PANDAS, asbergers and Lyme. We have not started aggressive treatment yet but plan on it very soon. We have an apt. with a PANDAS doc soon. My son has severe anxiety and is so worried about his future even at such a young age. I think now would not be a good time for him to talk to someone, but once we get him more well I think it would be good for him. Are there any young adults here with PANDAS who might be willing, or do you know who I could contact? Thank you.

My son regressed after the MMR and has aspergers + PANDAS and Lyme. I really think the MMR vaccine started this whole mess for us and was wondering if anyone else has a similar case? w/ regression after a vaccine?

How is your 19 year old son doing now? Is he symptom free?

@ Nancy what infection kept coming back? Could your daughter have just relapsed because she got sick in general, like anyone with an autoimmune disease?

I was thinking of starting my son on the GAPS diet, invented by Natasha Mcbride. I was reading her FAQ and Lyme disease came up. Here's what she wrote. Wondering what some other parents here make of it: LYME DISEASE Many people are coming to the GAPS diet with or after having been treated for Lyme disease. What are your recommendations for these individuals? I recommend that you follow the Introduction Diet. If you find it too difficult, then implement the Full GAPS Diet first; you may be able to do the Intro diet later. The standard treatment for Lyme disease is antibiotics, lots of them. So, the gut flora in these people is damaged and needs restoring . Is the GAPS diet enough to eradicate Lyme disease or do we need to do something else to deal with this infection? Lyme disease is fashionable at the moment, as our medicine goes through fashions all the time; all sorts of problems are blamed on Lyme disease today. Lyme disease is caused by bacteria of the family Borrelia which are transmitted by ticks. The natural hosts for ticks are wild animals, such as deer, squirrels, chipmunks, rabbits and other animals. Borrelia has been in existence for a long time, possibly longer than us, humans. Yet Lyme disease has become so common only recently despite the fact that contact with wild animals is very minimal in our modern urbanised populations. So, what happened? A very big thing happened in the recent few decades: our immune systems gotcompromised by our modern life-styles and the environment which we, humans, have created. A good demonstration of this is what is happening to the bee population in the industrialised world: the bees are dying out. They are dying out from a couple of opportunistic infections, which they used to be resistant to only a few decades ago. Why? Because their immunity has been compromised by all the spraying of the countryside done by our modern agriculture. We, humans, are no different. When your immune system is not working properly, you become susceptible to all sorts of infections, which used to be harmless. People who suffer from chronic fatigue, fibromyalgia, peripheral neuropathy, autoimmunity and other degenerative conditions, recently blamed on Lyme disease, are immune-compromised. The fact that Borrelia has been discovered by our science does not mean that it is the answer to these problems: when the immune system is disabled, all sorts of microbes can be at work, many of which we have not even discovered yet. And indeed antibiotic treatment for Borrelia does not eradicate chronic degenerative conditions, despite the fact that tests may show that this bacterium is gone. Very powerful antibiotics are used to treat Lyme disease, often intravenously and long-term. Antibiotics are not harmless! Healthy bodily flora is the most essential factor in keeping your immunity healthy. Antibiotics will destroy that factor very effectively, making your immune system even more disabled, making you even more vulnerable to Borrelia or any other pathogen. So, if you suffer from a chronic degenerative condition and had a positive test for Lyme disease, don’t rush to have antibiotics. What you need to rush to do is to restore your immune system. Number one intervention is the food you eat! If you have digestive symptoms, follow the GAPS Nutritional Protocol. If your digestion is OK, follow the Weston A Price-type diet. As your immune system starts working again, it will deal with Borrelia and lots of other microbes, which you don’t even need to know about. A good percent of people, who test positive for Borrelia, have no symptoms and are healthy and well. Why? Because their immune systems are working properly! And make no mistake: well-functioning human immune system is infinitely cleverer, than any doctor or scientist! The only exception is a fresh Borrelia infection from a recent tick bite (which was tested and identified as such), which manifested with typical symptoms of a fresh Borrelia infection: erythema migrans (a typical circular skin rash) in combination with flu-like symptoms of fever, malaise and aching joints and muscles. A course of antibiotics in this situation is sensible. While taking antibiotics take all the essential steps to boost your immunity with diet and protect your gut flora with a good quality probiotic. Following the GAPS diet or the WAPF-type diet will restore your immune system long-term. The question about eradicating Borrelia: why eradicate? If somebody did a study of testing everybody for this parasite, they may find that the majority of the population has it, just as the majority of the population has H pylori in their stomachs. We do know that about 70-80% of people who test positive for H pylori are healthy and have no symptoms. Should we try to eradicate H pylori in all of them, exposing them to powerful antibiotics? Absolutely not! Vast majority of microbes on this planet are not our enemies, they are our friends! What every one of us has to do is to find a balance, a harmony between the myriad of microbes living on us and inside us and our immune systems. So, focus on feeding, nourishing and nurturing your immune system, rather than killing, attacking or eradicating anything.

I'm very sorry, but I am very curious about genetics. For those who experience schizophrenic like symptoms does anyone in your family suffer from schizophrenia? Any family history?

PowPow, did you do multiple high dose IVIG with your son after his PANDAS diagnosis?

I think too it's important to realize that Lyme & Bart will not cause schizophrenia like symptoms in everyone. My son has Lyme Bart and PANDAS but does not have these problems. Genetics must be involved to some extent??? Should I expect my son to develop this??

I don't know what to do for my son. He is suffering so much. I've read so much about Lyme on this forum and then so much about IVIG, but does IVIG work even if you have Lyme? Will it work for the autoimmune part of Lyme?

IMHO, gut flora can be repopulated and supported, but ALL medications and/or supplements have potential side effects or interactions. The danger in not fully recognizing the potential contribution made by abx when it comes to PANDAS is that the neurological issues tend to alternatively get met with psychiatric meds, treating the resulting symptomology of the illness but not the illness itself. And all too frequently, the psych meds don't work anyway when abx are needed; our family knows that from personal experience. Furthermore, the long-term impacts of psych meds on our kids remain to be fully understood, while long-term abx have been utilized to combat illnesses such as rheumatic fever, tuberculosis and malaria for decades. The frequent and/or prolonged use of abx have been vilified for helping create resistant strains of bacteria, but this is not unlike the argument over vaccinations and herd immunity; should our kids suffer so that the herd has less chance for being struck by resistant microbes? Maybe gut flora can be repopulated, but not the mutated genes that don't develop correctly due to the lack of beneficial flora. Have you read this article at all? http://www.foodconsumer.org/newsite/Nutrition/Supplements/probiotics_1205110845.html Antibiotics scare me to death for my son! Gene Expression: As noted above, researchers also discovered that the absence or presence of gut microorganisms during infancy permanently alters gene expression. Through gene profiling, they were able to discern that absence of gut bacteria altered genes and signaling pathways involved in learning, memory, and motor control. This suggests that gut bacteria are closely tied to early brain development and subsequent behavior. These behavioral changes could be reversed as long as the mice were exposed to normal microorganisms early in life. But once the germ-free mice had reached adulthood, colonizing them with bacteria did not influence their behavior.

Yes I agree. However, if antibiotics provide neuro protection, wouldn't it be better to find a drug that does the same thing and save the gut flora?

I have not treated my son yet with immunomodulatory treatment. I think it's a difficult decision. My son son just started namenda and he is doing great on it. My husband and I were told that if PANDAS goes untreated, the consequences would be getting behind in school and not developing proper socialization skills. I think the key is to get these kids functioning as fast as possible so they don't fall too far behind?

Perhaps they have information on long term cases where antibiotic use did more harm than good?

Does your son currently have any problems after treatment for PANDAS? My sons just recently got an aspergers diagnosis as well. My son wasn't normal before he was on the spectrum and I'm concerned that after IVIG he won't be completely normal either.

So my questions are, how common is PANDAS in autistic children, and secomd, how common is PANDAS with sexual type tics of coprolalia and copropraxia? It is getting very disruptive and difficult to be around my son anymore. We love him like crazy, but it's taking a toll on our family. I was under the impression that the tics and OCD seen with Autism were essentially PANDAS and that the two disorders typically go hand in hand. Can tics and OCD co-exist in Autism w/o PANDAS?

Hello everyone, I'm new here. My son was just recently diagnosed with PANDAS. I'm so scared for my little guy. For those with older children with PANDAS, what is the outcome? Does PANDAS go away? Is damage permanent? I've been reading and reading so many mixed things! I'm new to all of this, not sure which way to go, not sure what to believe. Any help/input would be appreciated. Especially with the permanent damage part! It scares me!